I am a family caregiver to my mother, who is 94, has dementia and lives with us. I am also a caregiver to my 64-year-old husband who has frontotemporal degeneration (FTD), the leading cause of dementia under the age of 60.
We have always enjoyed traveling. Before my husband's diagnosis, I took Mom on several bucket trips: One to Chicago (we live near Atlanta, Ga.), one to Florida and one three-week trip to New England and New York City. We attended a Broadway play and toured the city by wheelchair for six hours, seeing every sight. We also went to Maine and Vermont.
Most people think that traveling is out of the question when you travel with someone who has dementia. That is far from the truth. Since my husband's diagnosis, we try to travel every few months. We always use a home through Airbnb, VRBO, or HomeAway, which makes our stay comfortable. We even travel with our two black labs now and then. Anything is possible with good planning. If you plan properly, you can have a great trip and make wonderful memories. Keep in mind the following as you make your plans:
If you are traveling within the U.S. or flying out of the U.S., you can use TSA Cares. They will have a special TSA agent meet you in the terminal, take you through security without waiting and get you to the gate. You should call them at least 72 hours in advance to ask any questions, give them your itinerary, and make arrangements for meeting the TSA agent. Visit the TSA Cares website for updated contact information and hours.
When you board the plane, make the flight attendants aware that you are traveling with someone with dementia. Place them next to the window and bring an iPad or an MP3 player with headphones to keep them entertained on the flight.
You might want to use an airport wheelchair in larger airports. You can get these outside at the check-in area. Always carry medicines on the flight with you. Also, if you are sharing your space with someone else, inform them of your family member's dementia in the event of something being said that might be inappropriate.
I would suggest not making a trip or a day longer than six hours. This would include taking time out to have lunch out of the car. When stopping to eat, stop in a place you know they like. Have them tell you what they want before entering the restaurant. Fast food restaurants with large hanging menus with lots of choices are too overwhelming.
If bathroom issues are a problem, try using the incontinent supplies that look like underwear in case of accidents, even if they're not incontinent. Sometimes rest areas are far apart.
Listening to favorite music and enabling child locks can make the trip less stressful.
Always try to get a room in a quiet area. If you're staying for more than one night, consider using Airbnb or VRBO for a house or apartment. This is more home-like and you can make your own breakfast and maintain a more normal routine. The cost is usually comparable to most hotels in most locations.
Carry night lights so the room is not dark when trying to find the bathroom at night. If you can't sleep with light, bring a night mask.
Engage the night lock on the door so they don't leave the room trying to find the bathroom. If you're worried that they'll wander, this affordable and easy to use personal safety alarm can give you peace of mind. Bring waterproof pads for the bed and a folding shower chair or ask for a handicap room (these are rarely guaranteed).
When going out to eat, go online and check out the menu. Ask your caree to pick out what they want before you get there. Do all the ordering. When out in public, if something happens to create an issue, carry cards with you saying that your caree has dementia and to please be patient. If you are not their advocate, who will be? Do not be embarrassed by behavior, it is not their choice to act out, it is their brain causing the issue. You can't expect someone with dementia to act normally. People must be made aware of how dementia affects people. How many times have you been in a restaurant and had screaming kids around you? If it is an outburst, simply say, "Sorry, dementia", and go about calming them.
Grocery stores can be overwhelming with all the aisles, all the choices and people pushing carts. I always have my husband push the cart, but I have a hold on the front end and guide the cart. When going through check out, I stay at the front of the cart to unload. He can then see me and watch me instead of getting away from me if he were in front.
Caregiving can feel like it takes so much from us. With proper planning, we can make sure that we keep traveling as long as possible.
Sharon cares for her mom and her husband, diagnosed with FTD in the fall of 2015, and moderates the FTD chat on CareGiving.com which happens every Monday at 7 p.m. ET (6 p.m. CT, 5 p.m. MT, 4 p.m. PT).